Category Archives: Trends

Informed Consent in a New Era

Informed Consent copy

I’m a big fan of John Wilbanks’ work in the area of open personal health data and informed consent, and have blogged about that here before. Briefly, my awareness of John’s work began with “We Consent” which has now transformed into Sage’s “Participant Centered Consent Toolkit.”

Cool Toys Pic of the day - We Consent
Sage: Participant-Centered Consent Toolkit (E-Consent)

Recently someone asked me a question about “online informed consent.” I think they were remembering my having mentioned John Wilkin’s stuff, a.k.a “portable legal consent” or “portable informed consent.” These and “online informed consent” are … related concepts, but perhaps not as closely related as some might think. Just to complicate matters, people are also using jargon like “dynamic consent” and “broad consent” to mean things related to both of these, but which are not quite the same. There are also people trying to get the phrase “informed consent” converted to “educated consent” as possibly being more meaningful. In this post, I will try to sort some of this out, but I’m no kind of expert in consent, and this is complicated, really REALLY complicated.

First, the short-short explanation. Portable informed consent (PIC) usually is part of online informed consent, but online informed consent (OIC) is rarely portable. Riiiight. OK, a step backwards.

PORTABLE CONSENT

The idea of portable informed consent is (in my mind, at least) analogous to Creative Commons licensing for your own creative works, except that it applies to your own health data. Actually, the idea of this really came from people wanting to share genomic data. You walk through an online informed consent process, agree to which version of a license you are comfortable with, and then when you share your data in a secure repository, that license or consent agreement is attached. People who want to use your data, must agree to follow those predetermined restrictions. Researchers who don’t agree, aren’t allowed to see your data, only data from other folk who agree to whatever guidelines they need for their project. Researchers who don’t follow the rules will be denied access to all of the data.

Personal Genomics

Genomics is basically mapping the genome. Personal genomics is doing this for a person in particular, rather than a species or condition or other collective group. Some people get involved in exploring personal genomics because of simple curiosity, but many are driven by long standing medical challenges without any easily identifiable solution. Some people are terrified at the idea of what they might find out. Others are concerned that the data will result in problems with jobs or insurance. Those urgently seeking help for health problems often want to share and find others who might have insights into their problem. OpenSNP and the Personal Genome Project are two examples of places where people share their genomic data. By making their data public and consenting to its use by researchers, they are hoping to support solutions not only for themselves but for others like them. Making sure that consent is LEGAL is essential for supporting future research. One great example of this is Jay Lake, who contributed his whole DNA sequencing data and that of his tumor, making possible research on new treatments that came too late for him. It’s a powerful story.

ONLINE INFORMED CONSENT

Online informed consent is a great deal simpler, in that it mostly takes the usual informed consent process (reading forms, signing forms, filing forms) and puts it all into an online web-based interface in a secure system. But, PIC gets more buzz in the popular press and media, while OIC gets more attention from within the hallways of day-to-day research communities. PIC grew out of work with personal genomics and is designed to make data sharing simpler, research more open, and problem solving more dynamic, all while still being responsive to issues of privacy and ethics. OIC is a tool designed to make the IRB management simpler for researchers.

DYNAMIC CONSENT

Dynamic consent is closer to portable consent, but grew more out of tissue and biobanking contexts, rather than data or genomics. Dynamic consent has a lot of nitpicky little options, and allows you to change your mind over time. That’s why it’s dynamic — things keep changing. Right now, dynamic consent is used primarily for what happens to parts of your body that are removed from your body while you are alive, and used for various medical purposes. Sometimes those purposes involved throwing what wasn’t used in the nearest incinerator, but sometimes there is something interesting and the doctors or researchers want to keep a sample for future use.

Biobanking

Now, remember, I’m drastically oversimplifying here. There are many more situations and options that come into play. Healthcare researchers have come to realize that we often don’t know where the next interesting possibility will come from, which is part of why biobanking is becoming more important. A biobank is sort of a library of tissues (meaning parts of human or animals or plants). Biobanks are often focused on a certain type of tissue or condition. Many biobanks collect tissues for a particular kind of cancer, or conditions like Parkinson’s, Alzheimer, autism, etc. Others may focus on a particular organ, like brains, breast tissue, lungs, or genome. In book and journal libraries, the librarians have traditionally spent a lot of time trying to select just the most important material on their special topics, but over generations, we’ve found the most desired content is as often as not the parts that were considered cheap and unimportant at the time, which are now expensive and hard to find, because no one kept them. Some of the same issues are coming up with biobanking, but complicated by the challenge of each and every sample being unique (although there might be copies of cell lines). At least with books, if one library lost theirs, another library might have a copy. Part of the idea of all these different kinds of consent is to try to maximise the number and diversity of samples that can be preserved and made accessible to future researchers.

PRESUMED CONSENT

Presumed consent also related to tissues, actually organ donation, but after you are no longer alive or aware enough to give or change your consent. Where I live, you have to register as an organ donor. If you don’t, and are in a fatal accident, no one is allowed to use your organs as transplants to save the lives of other folk who need new organs to survive. That isn’t how it works in all countries, though. In some countries they have “presumed consent,” where the assumption is that organ donation is fine with you as long as you don’t say NO beforehand. So, opt-in vs. opt-out. That’s the main difference. Sounds simple, doesn’t it? But people have incredibly strong feelings about both of these options.

BROAD CONSENT

Broad consent is probably the messiest of all of these. Just look at these article titles!

Can Broad Consent be Informed Consent?

Broad consent is informed consent

Broad consent versus dynamic consent in biobank research: Is passive participation an ethical problem?

Broad Consent Versus Dynamic Consent: Pros And Cons For Biobankers To Consider

Broad Consent in Biobanking: Reflections on Seemingly Insurmountable Dilemmas

Should donors be allowed to give broad consent to future biobank research?

You can just feel the tensions rising as you read through the list. It is obvious that this is not an area of consensus. And what can it possibly mean to consent mean when there isn’t an agreement about what consent is?

“Broad consents are not open nor are blanket consents. To give a broad consent means consenting to a framework for future research of certain types.” Steinsbekk KS, Myskja BK, Solberg B. Broad consent versus dynamic consent in biobank research: Is passive participation an ethical problem? European Journal of Human Genetics (2013) 21:897–902.

Broad consent attempts to make a best guess of what might be needed by the researcher of the future, and to try to get the individual to agree to a flexible use and reuse of tissues, samples, or data. As you can tell from the titles above, “broad consent” tends to refer to tissues rather than data, but when you get down to brass tacks, all of these could theoretically apply to a wide variety of donated content.

CLOSING THOUGHTS

The idea behind all of these myriad forms of consent is knotted into the dynamic between the rights of the individual and the needs of the community. Without research, we stagnate and die, literally, since solutions cannot be discovered for the aches and pains and problems that lead to increased mortality and reduced longevity. As a community, as a species, we don’t make progress without sharing. At the same time, the goal is to reduce harm to individuals, and forcing people to ‘consent’ against their will causes harm. I’ve known people who practically had a nervous breakdown at the idea of becoming an organ donor, the idea of part of them living on in someone else distressed them that deeply. I know others who fear what could happen to them if their genetic data fell into the “wrong hands.” I’m not one of them. I’m a registered organ donor, and I donated my genomic data to OpenSNP. But I still respect the emotional pain that would be caused by forcing consent. It’s an ethical dilemma which our society is obviously still working to solve. While looking at background material for this post I stumbled across two phrases that seemed to express some of the challenges well: “From Informed Consent to No Consent?” “Open Consent for Closed Minds.”

“I’m proposing … that we reach into our bodies and we grab the genotype, and we reach into the medical system and we grab our records, and we use it to build something together.” “I hate [the] word ‘patient.’ I don’t like being patient when … health care is broken.” John Wilbanks

Personalized Medicine, Biosensors, Mobile Medical Apps, and More

At the Quantified Self Meetup, someone was praising the Rock Health slides. Of course, I had to go explore and see what was so great. These are my favorites.

About FDA’s Guidance for Mobile Medical Apps

FDA 101: A guide to the FDA for digital health entrepreneurs by @Rock_Health: http://www.slideshare.net/RockHealth/fda-101-a-guide-to-the-fda-for-digital-health-entrepreneurs

I especially took note of slide 10, where they describe things I would think of as an app, but which do not qualify as such for FDA regulation. This is an important distinction I hadn’t previously considered. Slide 12 takes it further by describing the categories of regulation as based on risk to patients, with good clear examples. Slie 21 on “pro tips” would have really benefitted companies like 23andMe (even though that isn’t actually a mobile medical app, the pro tips still apply, and in spades).

Biosensing Wearable Tech

The Future of Biosensing Wearables by @Rock_Health http://www.slideshare.net/RockHealth/the-future-of-biosensing-wearables-by-rockhealth

This one definitely gets into topics relevant to the quantified self movement and self-tracking. Slide six emphasizes the shift from the low hanging fruit (fitness, pulse, sleep) to the long tail — more targeted solutions for specific challenges (hydration, glucose, salinity, skin conductance, posture, oxygenation, heart rhythm, respiration, eyetracking, brain activity, etc.). That’s really quite interesting, and it gives examples of companies working in each space.

Slides 19-24 get into several of the areas our own local meetup defined as challenges to success for companies working in this space and for the future success of the entire area — it has to work, easily, and dependably. Slides 27-30 extrapolate these challenges into the transition into healthcare environments.

Personalized Medicine

The Future of Personalized Health Care: Predictive Analytics by @Rock_Health http://www.slideshare.net/RockHealth/the-future-of-personalized-health-care-predictive-analytics-press Video https://www.youtube.com/watch?v=UJak41hIDWc

SLIDES

VIDEO

It’s probably safe to say that most individuals working in the quantified self / self-tracking space eventually end up struggling with the issue of how to use their data to anticipate avoidable problems. This idea can be translated into the jargon phrase of “predictive analytics.” Slide 11 does a nice job of lining this up with how traditional healthcare is practiced, which is very useful. Slide 12 places this in the context of big data resources, databases, and tools, listing several of the main players. This context is essential for making personal data relevant beyond the drawn out process of n=1 studies. Slide 14 identifies the BIG problem of how companies working in this space largely focus on hospitals and health care providers, and seem to have entirely missed the idea that patients are deeply and actively engaged in this space. And, frankly, there are more of us than them (even if our pockets aren’t as deep). I love the phrase on slide 18, “Symptom calculators are the “recommendation engines” of health care.” Most of the rest of the deck identifies challenges and opportunities, which I hope any entrepreneurial types would examine closely. Do notice that there is a video with this one. You can hear the entire webinar as well as reviewing the slides.

Quantified Self Meetup, Ann Arbor

Cool Toys, Devices, Quantified Self

Last week, I felt really lucky that I was able to make it to the first Quantified Self Meetup of the New Year (thanks to Nancy Gilby for the ride!). This session was held at the UMSI Entrepreneurship Center. Roughly ten folk came, and I’m not sharing names even though they said I could because I’m not sure I got the names down right. The group included a wide range of types of people: corporate folk, students, entrepreneurs, faculty, alumni, and independents. The conversation was fast, dynamic, and overlapping, so I couldn’t catch everything. I will talk about what I did catch of the IDEAS and the GADGETS. That’s what’s really fun, eh?

INTERESTS

What the Meetup group page SAYS they are interested in (as a sampling) is pretty extensive.

“Aging in Place Technology • Behavior change and monitoring • Caregiving of digital patients • Chemical Body Load Counts • Citizen science• Digitizing Body Info • Medical Self-Diagnostics • Lifelogging• Location tracking • Non-invasive Probes• Mindfulness and wisdom tracking • Parenting through monitoring/ tracking • Personal Genome Sequencing • Psychological Self-Assessments • Risks/Legal Rights/Duties • Self Experimentation • Sharing Health Records • Wearable Sensemaking”

What’s even more interesting is what people said they were interested in as they went around the table.

  • aging population
  • big data
  • biohacking
  • data visualization
  • diabetes
  • epigenetics
  • fitness
  • geofencing
  • legal advice
  • patient communities
  • personal genomics
  • sleep tracking
  • telehealth

The “legal advice” bit? That was from someone planning a wearable tech start up. They got some interesting answers on that point: Scott Olson, of UM’s Pediatric Device Consortium; SPARK; Medical Innovation Center, Fast Forward Medical Innovation, and (depending on your UM affiliation) possibly the Student Legal Services, UM’s Startup Law Clinic (Twitter), Zell Lurie Institute.

For the personal genomics, it was a great surprise to me to meet another person who knows their MTHFR status (and who also has two defective copies of the gene, AND is working on problem solving as hard as I am)! We were swapping info, apps, diet tips and tricks, formulations of supplements, and more. There just wasn’t enough time to dig as deeply into this as I wished. I did get to do my now normal rant, “23andMe was NOT killed off!”

ISSUES

After introductions, we just had an open conversation, much of which touched on challenges in quantified self tools. This was what had the meeting stretching WAY past the planned time!

  • QS devices are not being designed for longevity, but for rapid failure
  • QS devices are not being designed to actually work, by and large, which is frustrating to folk buying them early, and an argument for doing QS with low-tech self-hacked solutions
  • to integrate into personal healthcare solutions, there is a need for calibration with official medical devices
  • how are data measurements defined? it. “sleep” cycles based on movement, rather than REM cycles.
  • desperate need for standards of measurement, to empower folk wanting to discover trends and patterns across tools, data sources, and apps
  • who is funding these?
  • data visualization for self-discovery; “correlation” vs aggregator apps; challenges of meaningful analysis
  • HIPAA and QS: patient self-reporting data as an FDA loophole; PHI – Personal Health Information (personal sharing loophole)
  • requirements for insurance coverage – need doctor’s prescription for some very useful medical devices; reimbursement codes can be tricky
  • reverse innovation
  • risk science, risk of failure, costs of failure
  • when designing a device, think about how will it fail?
    design for how to make it work or how to make it fail?
  • how can small companies compete? “innovative/unique, protected, acquired”
  • security, open data, hack into someone else’s data, ownership of data

Any one of these could easily be a devoted session, presentation, or series of blogposts. The bit about failure especially interested me. The idea was that these devices seem to be being designed to fail, as is pretty standard for tech in general these days. But what happens to the end user if they get to the point where they trust the wearable tech device, trust its data, and can’t tell that it has stopped working properly or is on the verge of failure? The FDA keeps tabs on what happens with medical device failures in their MAUDE database. The problem is that this only applies to devices that go through FDA approval, and most of the wearable tech devices folk use for biohacking or self-tracking personal health information, well, they are not FDA approved. People were talking about how much risk is there, impacts, and devices that are low risk. I shared a story of a time when a blood pressure cuff lead to a fatality some decades ago. That was pretty shocking to them, because we tend to think of blood pressure cuffs as being pretty innocuous. How did it happen? It failed during surgery, and kept giving normal readings when the patient was actually having trouble. The idea was that even simple tech can have serious impacts when the stakes are high and people are depending on it.

DEVICES, SERVICES, APPS, & MORE

Of course, we all had to talk about our toys, how we like them or don’t, what we’d change, what we’re thinking about buying, our experiences with customer service from the different companies, companies that are failing or expanding, new releases, etc. I tried to keep a list of devices mentioned or waved around (not all of which were pertinent to QS), but I’m pretty sure I missed a few. The same is true of services, apps, and such, but I’ll give links for the ones I caught.

DEVICES

While most of the gadgets mentioned were in the room and functional, that wasn’t true across the board. Some of these were mentioned as warnings (“a glorified pedometer” “gave me headaches” “out of business”), so please don’t take this list as an endorsement.

SERVICES

I know there was another few genetic analysis tools mentioned that I can’t remember, and I’m really frustrated that I can’t remember. Later, trying to prod my memory, I found this great list (“What else can I do with my DNA test results?“) but I’m still hoping that the person who mentioned the other tools will comment on this post with what I missed.

APPS / SOFTWARE

The apps here include tools for mobile and desktop, for data analysis, self-tracking, behavior modification, communities, and time management / lifehacking. What isn’t included is the conversation about low-tech alternatives, such as replacing calorie counting apps with photos of what you ate, or using notebooks instead of tracking apps. Quantified self doesn’t have to take a lot of money and gadgets (but perhaps that should be a separate post).

RESOURCES

Please note that this is NOT a collection of the best ever anywhere resources on Quantified Self, but rather (as with all the other lists in this post) a collection of what was mentioned during the meeting.

Last but not least, I collected a whole bunch of links I stumbled on during the meeting in one large “OneTab” collection. It includes 76 web pages that I wanted to come back to, reflecting more details or random conversation digressions. You can find it here: http://www.one-tab.com/page/EKdC99v0Q2-nZYfOm41lOw.

At the Movies: Emerging Technologies for the New Year!

This is my last official work day of the year, which makes me think it is a ripe time to do a post looking over trends in emerging technologies. Maybe even a few posts. For starters, here is a roundup of videos from the past year that are looking at emerging technologies. Well, and you should always keep your eye on the Stanford Medicine X and TEDMED channels. FORAtv is another I like to track, although less medically oriented. This selection and more are available in my Emerging Technologies playlist.


The State of Technology in 2015 https://www.youtube.com/watch?v=TvWNonpZiIY
This video is by far the most Christmas-y of the collection, including Santa, the North Pole Workshop, and more. Watch for these emerging technologies. Did I miss any?
– ubiquitous satellite phones
– autolocation via GPS for crisis response
– independent robotic drones make deliveries
– Google Glass
– driverless cars
– 3d printing
– bioprinting
– auto-translation apps


Technology in Education: A Future Classroom https://www.youtube.com/watch?v=uZ73ZsBkcus
[From the 2014 White House Student Film Festival]
– greater variety of displays
– interactivity of surfaces
– portability
– interactive holographic displays for multiple viewers
– smart glass
– data & virtual object sharing for collaboration
– tutorials that track activities
– learning analytics
– gamification
– badges


Top 10 future technologies coming in 2015 (links) https://www.youtube.com/watch?v=ViF_jJUfgio
– resonance (wireless) chargers
– 3d printing
– Windows 9
– iPhone 6, Sapphire screen (unscratchable & unbreakable)
– flexible tablets
– virtual reality headsets
– artificial self-regulating heart
– 1 terabyte archival disks (“CD”s / BlueRay)
– driverless cars
– Google’s Project Ara (modular personalized mobile/smartphone device design)


SIGGRAPH 2014 : Emerging Technologies Preview Trailer https://www.youtube.com/watch?v=rmyGD4yRTGE
– Pixie Dust (acoustic levitation of small objects)
– cascaded displays (spatiotemporal superresolution using offset pixel layers)
– Traxion (tactile interaction device with virtual force sensation)
– physical rendering with a digital airbrush
– HaptoMirage (interaction with 3D virtual environment without need of special glasses)
– MaD (mapping by demonstration, sonification of gestures to provide feedback, possible accessibility applications)
Cyberith Virtualizer
Birdly (see also Flying the Birdly Virtual Reality Simulator)


Welcome To The Future ( Samsung ) HD https://www.youtube.com/watch?v=XyIvSIY0MTM
Just about displays, only the future of display technology, and how this will impact on our interactions with information and data in daily life.
– Flexible & sensor integrated displays
– Wall display
– Foldable display
– Bended display
– Automotive window display
– Blackboard display
– Unbreakable display
– Edu-desk display
– Transparent elevator display
– 3-foldable display
– Wearable display
– Smart window
– Table display
– Transparent large-format display
– Interactive floor display


World Economic Forum names top 10 emerging technologies of 2014 https://www.youtube.com/watch?v=DniRTZx1FCw
– Body-adapted wearable electronics
– Nanostructured carbon composites
– Mining metals from desalination brine
– Grid-scale electricity storage
– Nanowire lithium-ion batteries
– Screenless display
– Human microbiome therapeutics
– RNA-based therapeutics
– Quantified self
– Brain-computer interfaces (BCI)
Most interesting observation from the video: “need for regulatory frameworks & strategic alliances among innovators and market leaders.” The report is available as a PDF.


Hybrid Librarian: Future’s 10 Mind-Blowing Technologies About to Emerge https://www.youtube.com/watch?v=K587Za5qSjA
– super smart assistants (intelligent assistants, AI, like Siri, Cortana, Google Now, Watson, Cyc)
– hypersonic trains
– wearable computers
– advanced 3D printing
– lab-grown organs
– super immersive gaming
– bionic arms
– driverless cars
– holographic technology
– eternal life


Make It Wearable (playlist) | Episode 2: Human Health https://www.youtube.com/watch?v=I2l3e1oNwUU
– trackers
– behavior modification
– big data
– patient-clincian relationship change
– injury identification
– rehabilitation
– prompts
– answer new questions
– data ownership
– research in the actual environment where behavior occurs
– “everyone can say, ‘this is my question. this is my data.'”

Ebola and Emerging Technologies

Ebola & Emerging Tech

Ebola & Emerging Tech: http://www.mindmeister.com/485610588/ebola-emerging-tech

Our local Cool Toys Conversations group had asked to have a discussion of emerging technologies and Ebola, and “could we please have it before the holidays when everyone will be traveling?” I had tried to get this up early last week, but life happened, and so it is coming to you now.

When we started looking at this topic I was surprised to find so much! I probably shouldn’t have been — Ebola is big news. It seems as if everyone doing anything in tech and emerging tech is doing something interesting related to Ebola. Well, except Apple. And that surprised me, too. There were so many links, so many topics, I could have EASILY done a month of daily blogposts just on this topic. Once we started, we kept finding more. The collection of links was getting overblown, random, chaotic, confusing. I decided to organize them all in a mindmap, and doing that took a while. Mindmeister kept saying, “Too many topics at one level!” This is why it is broken down into 4 section, but don’t take those sections too seriously. They are more an artifact of the process than seriously meaningful. Each major topic probably has minor topics and links that could easily belong in another section. For that reason, I thought it might be helpful to give an alphabetic list here of what’s included in the mindmap (which is also where you’ll find all the actual links – hint? Click on the little arrows).

I have so many favorite projects and resources I can’t possibly highlight them all. If life and time permit, I’ll try to throw together a slideshow with screenshots of some of them. Just as teasers, here are just a … a smidgen, a teeny tiny sampling. Tim Unwin wrote a great overview of exciting ways in which emerging technologies are being used in the Ebola crisis. Biosensors, wearable tech, open everything, code repositories, data, genetics, DIYbio, mapping and tracking, apps (tons of them), reverse innovation, open source pharma, gaming, cryogenics, … the list goes on and on. You already know how completely enchanted I am with the maker movement right now, and this is no exception. Makers Against Ebola designed flash sensors and proximity alarms to help prevent contamination while working with patients, pull tabs and zipper extenders to make it easier to get in and out of the Personal Protective Environments (which you might recognize better as hazmat suits). The DIY Ebola Challenge came up with a great variety of open source hardware solutions for scientific equipment, in efforts to design a kit they couple bundle and share at point of need. So far they have centrifuges in all sizes, PCR thermocycler, gel electrophoresis, spectrometers, multichannel pipettes, and more. Other folk are using tools like the Raspberry Pi and Beaglebone Black to design inexpensive syringe pumps and diagnostics. And then there’s robots! Robots to decontaminate, robots to intercede between people and create a distance than may contain the disease (like a social firebreak). The ways in which people are using tech to highlight the personal aspect is also awe-inspiring. From citizen journalism to ebola MOOCs to the WAYout Ebola Song, with every social media tool you can name, someone is doing something to try to help share important stories and information. There is a lot more in the mindmap, with links for everything. There’s even a section on open access images about Ebola to use foe teaching, training, and education. Check it out — here’s an outline.

GENERAL

Articles
Collections

PEOPLE DRIVEN

Advocacy
Citizen Science
Citizen Journalism
Collaboration Tech
Communication (Challenges: Misinformation & Hype, Stigma, Weaponized; Solutions: Education & Training, Ebola Information, MOOCs, Information & Health Literacy, Wikipedia
Social Media
Research
Crowdfunding
Crowdsourcing (Challenges)
Makers & DIY
Open (Open Access, Open Images, Open Data, Open Government, Open IBM, Open Source Code Repositories, Open Source Pharma, Open Sources Wearables)
Reverse Innovation

SCIENCE DRIVEN

Arxiv/bioRxiv
Biohacking / DIYbio / SynBio
Data (Data modeling, Data visualization
Open Data
Diagnostics
Genetics
Mapping / Tracking
Nanosilver
NASA

TECH DRIVEN

3D Printing
Apps
Biosensors
Biotech
DARPA
Biocontainment
Cryogenics
Diagnosis
Gaming
Geolocation / Geotagging / GPS
Hackers
IBM
Mobile
Robotics (Asepsis, Telepresence)
Telemedicine
Wearable Tech (Biocontainment, Personal Protective Environments)

Risky Hashtags (#OzsInbox) – Hashtags of the Week (HOTW): (Week of November 17, 2014)

Social Media Gone Wrong
Social Media Gone Wrong: http://www.pinterest.com/rosefirerising/social-media-gone-wrong/

Recently, there seems to be a rash of examples of social media gone wrong. Last weekend, it was the Facebook post by a GOP communications staffer criticizing the way President Obama’s children dress.

The weekend before that it was Bill Cosby’s new meme generator, which was promptly used by the public to comment on his presumed sexual practices.

Before that, it was Dr. Oz’s request for health questions he could discuss on the show. That didn’t go so well, either.

There are several more examples along these lines, many including hashtags that have been misappropriated by the audience. Evidently the audiences weren’t quite what was expected by the companies creating the hashtags for their marketing campaigns. The Cosby example was one of those, with #CosbyMeme. The Dr. Oz example is another. He used the hashtag #ozsinbox. Some folk read it as #OzsInbox, but others read it as #OzSinBox. Oops.

Since the HOTW series focuses on hashtags, I thought it would be appropriate to spend a little bit of time talking about how hashtags can go astray. At the same time, I don’t want to scare people away from using Twitter, so there will be a “part two” that talks more about how to use and choose Twitter hashtags to support your real goal. It does take a little advance thought and preparation, but done well, hashtags can be an amazingly powerful and useful way to get your message out and engage with people who are also passionate about it.

For now, just a few tips and thoughts about what happened with Dr. Oz.

TIP ONE: Do you REALLY want to do a Q&A?

The CDC routinely does Twitter chats with Q&As on emerging health topics. They did one recently on Ebola, for example. This is obviously a good thing, and a great way to let people say what worries them and then respond directly from experts with high quality authoritative health information. Don’t give up entirely on Q&As just because of this. But consider, there is a pattern of high profile people offering to do a Q&A and being targeted by those who don’t like them, who then take over the stream. I’ve done Twitter live interviews, but I’m not actually important or famous on the scale of either the CDC or Dr. Oz. So, before you offer to do a Q&A, think about reputation, context, and if you just want attention or actually have something of value to contribute. If you just want attention, are you alright with it not being good attention? Because that sometimes happens. People will tell you exactly what they really think of you, if that’s what you want.

TIP TWO: If doing a Q&A, try to imagine the kinds of questions you might get. Then ask a few friends. Then ask a few enemies. Then ask a half dozen teen age boys.

TIP THREE: Brainstorm alternate spellings & interpretations of the chosen hashtag

TIP FOUR: Are you OK with humor? How will you respond to folk joking around?

TIP FIVE: Consider your partners & employers. How does what you say & do reflect on them?

TIP SIX: What should you do if it all goes cockeyed?

This.

THOUGHT ONE: Reputation & Professionalism

There are a lot of doctors who gleefully tromped all over Dr. Oz, given this opportunity to do so. That set a kind of example. There were a few people who tried to say that they knew Dr. Oz before he was a media star, and that deep down there is a good doctor somewhere under all the hype. Those people were placing themselves at risk if they tried to defend him. Some media sources described the frenzy around the hashtag as being dominated by trolls.

Even if you completely believe that Dr. Oz is a horrible person who has lost his way in the maze of popular pseudoscience, if you entertain yourself by trashing him in a situation like this, how does that make YOU look? Is that the person you want to be? How does this make the profession appear? When doctors get snarky, does healthcare get a pie in the eye? It sets an example for the public when doctors trash each other. That might be a good thing, or it might not. I’m not sure yet. And remember, what you say can be misunderstood just as badly as anything said by anyone.

Dr. Pav Khaira has a background image on his page saying, “This is my simple religion. There is no need for temples; no need for complicated philosophy. Our own brain, our own heart is our temple; the philosophy is kindness.” Obviously, he has a good heart, and means well, but is also willing to poke fun with the best of them.

Who is Dr. Nick?

Dr. Sunil K Sahai was fairly new to Twitter when this came up. He came to regret what was intended as a funny tweet, and blogged about what he should have said instead, and how.

Dr. Jen Gunter became something of a folk hero among the Twitter healthcare community for this cogent post, and a few others.

More health care folk and what they think about Dr. Oz.

Doctors In Oz

OTHER TWEETS

CLOSING THOUGHTS

Want more? Here are the statistics, metrics, and more tweets.

#OzsInBox Begins

At the Movies: Public Health Aspects of E-Cigarettes, 10 (Or So) Thought-Provoking Videos

The Risk Bites video series is touching on many of my favorite emerging technologies topics. Every now and then, I’m hoping to take some of their topics and dig into the issues a little more. Today’s topic is e-cigs, which I’ve blogged about here before. Earlier this week, the e-cigarette panel discussion at the annual meeting of the American Public Health Association (#APHA14) attracted a great deal of attention, including attendance from the current Surgeon General.

In addition, APHA endorsed a public call to the FDA to push forward on regulating electronic cigarettes.

20149 Regulation of electronic cigarettes — Calls on the U.S. Food and Drug Administration to develop regulations that hold e-cigarettes to the same marketing and advertising standards as conventional tobacco cigarettes and calls for the federal funding of research on the short- and long-term health consequences of e-cigarette use. Urges the Consumer Product Safety Commission to require special packaging, including warning labels, on e-cigarette cartridges to help prevent childhood poisoning. Also calls on state and local official to restrict the sale of e-cigarettes to minors as well as the use of e-cigarettes in enclosed public areas and workplaces. APHA News Releases: New 2014 policy statements http://www.apha.org/news-and-media/news-releases/apha-news-releases/2014-policy-statements

This all makes this topic especially timely, and worthwhile of reviewing once more. Please note, I am NOT saying these are the reasons behind the APHA call for action, or even that there is research to support the points below. I am saying only that these are things I’ve noticed and found interesting. If there isn’t research, maybe there needs to be. If existing research doesn’t yet answer important safety questions, maybe we should act with caution until we do have those answers. It there is, then maybe I could share some in another post. I do believe that the issue of e-cigs is more nuanced than we might be led to believe by much of the public dialog around it — that there are both benefits and risks. So, with that caveat, here we go!

NUMBER 10


Electronic cigarettes and health – the basics https://www.youtube.com/watch?v=mToznqKD5Ac

Primary public health perspectives mentioned in this video:
– What are the impacts of use by children?
– E-Cigs reduce toxins from smoke for regular smokers
– Are e-cigs simply an easier path to nicotine addiction?
– Aside from the intended nicotine, there may be impurities & contaminants from e-liquid solutions
– The FDA only has oversight over certain aspects of e-cigs, and there may be a lack of regulation for other potentially risky aspects of the device & liquids.

This is a truly excellent introduction in very few minutes to the most important considerations of e-cigarette use. The best quick overview I’ve seen. There are a few other issues to possibly address. See the following videos for a broader picture of public health aspects of e-cigarettes.

NUMBER NINE

There have been (few, but some) reports of e-cigarette devices that were flawed in manufacture and did nasty stuff like explode in someone’s face. This is another aspect for the attention of regulators. Some of the explosions have been when on charge (as in this video), or have been modified in some way by the user (“at your own risk” becomes a very meaningful phrase). There are reports of this happening while in use and damaging the user’s face. Because this is not a medical device, these events are not being recorded in a way that allows healthcare systems to document and define the level of risk. Without that, you are basically depending on the industry to self-police manufacturing standards and error rates.


E-cigarette on charge explodes in bartender’s face: CAUGHT ON CCTV CAMERA https://www.youtube.com/watch?v=x1VrzgeG7jk

NUMBER EIGHT

We live in a MAKER world. People hack their medical devices, and people hack their home devices. Why should e-cigarettes be any different? According to this video people hack their e-cig devices to make them hotter, and to have less of a draw, so they can get more vapor with less effort. According to the scientists, this changes the risks associated with the chemicals. We need to ask not only what people are already doing to hack these devices, but what else they might do with them or their components. I’m sure we have yet to imagine everything that could be done with vape pens.


Mashable: How to Hack Your Own E-Cigarettes https://www.youtube.com/watch?v=rmxwnuTRMiw

NUMBER SEVEN

Vaping is a drug delivery mechanism. Nicotine is only one drug. There is talk about using vaping as a tool for delivering other medications that require inhalation, such as asthma meds. Of course, it needn’t be used solely for prescription meds, either. Vaping is also a tool for delivering street drugs, illegal drugs, and home made drugs. This, again, could be good or bad, depending on the circumstances.


How To Mix & Make Your Own E Juice Liquid DIY https://www.youtube.com/watch?v=x57PaibrOag

SPECIAL REPORT: Teens using E-Cigs to smoke marijuana http://www.nbc11news.com/home/headlines/SPECIAL-REPORT-Teens-using-E-Cigs-to-smoke-marijuana-245882671.html

NUMBER SIX

Remember the phrase “gateway drugs”? There are recipes all over the Internet for how to make your own e-cig liquid, and those recipes include directions for how to make e-cig liquid to deliver illegal drugs. I think the genie is out of the bottle on that one, but it is certainly an issue to address in public health circles. Of course, also keep in mind that e-cigs may be a alternate way to provide medical marijuana to patients.


How To: Potent Water-Soluble Cannabis Concentrate in Glycerin https://www.youtube.com/watch?v=MQyx8br65N0&list=PLpKaVRowbJ84eVJTLbAyVUUdzSXfJwLVS

NUMBER FIVE

People have mentioned the issues of e-cig flavors that are clearly being marketed specifically to children, and how the devices are being marketed as cool/fun/sexy for young adults.


Do Vape Pens Trick Teens? https://www.youtube.com/watch?v=HnKwHWyHH4g


A Sexy View of the ECC 2014 Expo – Vape Club https://www.youtube.com/watch?v=i6SQiu08DxQ

It really makes it look like fun, doesn’t it? That was actually the first thing that attracted my attention to e-cigarettes. I saw so many incredibly beautiful photos streaming thru the sites marketing the devices, it seemed like there was an awful lot of money and genius being poured into the campaigns. It made me wonder why.

NUMBER FOUR

Recent research from the CDC reveals that e-cig use among children and teens is skyrocketing. It may take time to learn the long term outcomes of this trend.


CDC: More kids lighting up e-cigarettes https://www.youtube.com/watch?v=zJ_BEiKpqaE


Growing Number of Youth Smoking Vaporizers https://www.youtube.com/watch?v=0L3so_qfpuo

NUMBER THREE

Research also seems to show that youth who start with e-cigs are more likely to convert to conventional cigarettes. This is, obviously, the reverse of using e-digs as a smoking cessation device.

Study: Youth who have used e-cigarettes are twice as likely to smoke conventional cigarettes
Study: Youth who have used e-cigarettes are twice as likely to smoke conventional cigarettes http://kimt.com/2014/09/24/study-youth-who-have-used-e-cigarettes-are-twice-as-likely-to-smoke-conventional-cigarettes/

Teenage E-Cigarette Use Likely Gateway to Smoking http://www.bloomberg.com/news/2014-03-06/teenage-e-cigarette-use-likely-gateway-to-smoking.html

Intentions to Smoke Cigarettes Among Never-Smoking U.S. Middle and High School Electronic Cigarette Users, National Youth Tobacco Survey, 2011–2013 http://ntr.oxfordjournals.org/content/early/2014/09/16/ntr.ntu166

NUMBER TWO

This video seems to me to be intentionally designed to scare people, BUT, despite the hyperbole and drum rolls, the content is largely factual, just framed to be extra exciting. I’m including links to the source content so you can dig into it more, and don’t have to depend on the video.


CDC Releases Negative Findings of E-Cigarettes https://www.youtube.com/watch?v=3bMUxSw1BoM

CDC: Youth Tobacco Prevention: Electronic Cigarettes: Key Findings: Intentions to smoke cigarettes among never-smoking U.S. middle and high school electronic cigarette users, National Youth Tobacco Survey, 2011-2013 http://www.cdc.gov/tobacco/youth/e-cigarettes/

CDC News Room: E-cigarette use more than doubles among U.S. middle and high school students from 2011-2012 http://www.cdc.gov/media/releases/2013/p0905-ecigarette-use.html

CDC News Room: More than a quarter-million youth who had never smoked a cigarette used e-cigarettes in 2013: http://www.cdc.gov/media/releases/2014/p0825-e-cigarettes.html

CDC: Youth and Tobacco Use: http://www.cdc.gov/tobacco/data_statistics/fact_sheets/youth_data/tobacco_use/

CDC Newsroom: Emerging tobacco products gaining popularity among youth; Increases in e-cigarette and hookah use show need for increased monitoring and prevention http://www.cdc.gov/media/releases/2013/p1114-emerging-tobacco-products.html

CDC Newsroom: New CDC study finds dramatic increase in e-cigarette-related calls to poison centers; Rapid rise highlights need to monitor nicotine exposure through e-cigarette liquid and prevent future poisonings http://www.cdc.gov/media/releases/2014/p0403-e-cigarette-poison.html

NUMBER ONE

The LONG version! An hour long lecture by Dr. Lynne Dawkins from the University of East London.


Electronic cigarettes: What we know so far https://www.youtube.com/watch?v=f6KBGH2F63A

Among other issues, she points out that excessive regulation of vape pens and e-digs could lead to people making their own devices. The genie is out of the lamp — people know what these are and how they work. It isn’t going to be that hard to make your own, but it may create other kinds of risks and quality control issues. Right now, you can actually buy kits to make your own vape pen at home.


How To Make A Home Made Vaporizer Out Of House Hold Items http://www.youtube.com/watch?v=2N0w34OWVx0


Just for balance, here are a couple of infographics about e-cigs and the balance of research, information, and evidence currently available.